The Personal Journal of a Stiff Man Syndrome Sufferer
One day in November 2003, 1 tripped over the flap of a large box in the workshop
and broke my kneecap in pieces and, with great hilarity from my work colleagues, they carted me off to A&E. I had fallen over a health and safety
box full of accident prevention material! After an operation to wire it back
together, I was in plaster from hip to toe for six weeks.
When I came out of plaster I thought a few weeks in the gym would get me back to normal. How wrong I was! I began to go terribly stiff in my back and legs, especially when talking to people. I found it difficult to walk and, to my horror, crossing a road became a nightmare. I had to wait until there was nothing in sight before I could cross - and I’m a townie used to skipping in-between cars. On one occasion a car hooted and I immediately froze. What is going on, I thought?
In April of 2004, one Monday morning, I got up for work as normal, bent down to put on my socks and started to shake. It took me an hour to get dressed and finally, very stiffly, set off to work, This happened for three days in a row. In the meantime, I made a doctor’s appointment for the Friday and in the meantime visited the occupational health dept at work to get a “sock puller-upper”, and helping hand device and even a long shoe horn which I find very useful. These things got me over the initial problems of back spasms, but I still had trouble bending over the sink to wash and to do up my shoes. I still do.
On the Friday the doctor told me the encouraging news that he thought I had the early symptoms of Parkinson’s disease - whoopee, that made me feel better! He sent a letter to the hospital for me to see a neurologist. In the meantime I began to have frequent falls. I had fallen over a few times and thought nothing of it, but one day in May I fell in the road and broke a bone in my hand. The next day I thought I would get to work early and go to A&E to get some tubigrip put on it to keep the swelling down, but it took me over half an hour to walk from my workshop to A&E. I was so stiff, but when I finally got there I started to go into spasm whereupon they threw me into a wheel chair and decided to keep me in to find out what the problem was. I was there for two weeks. I saw umpteen doctors and three consultants, who hadn’t got a clue what was wrong with me. Parkinson’s was ruled out but no alternative was given.
Eventually I saw a neurologist who immediately diagnosed SMS. I was then packed off from Kings Lynn to Addenbrookes in Cambridge, where the diagnosis was confirmed. Issued with diazepam and baclofen I was sent home, since when I have increased the baclofen but still go stiff on occasions and had a couple of bouts of back spasm. Once, when I was in the shower, I couldn’t get out for three quarters of an hour - at least I was very clean at the end of it, but when one lives on one’s own, these things can be quite frightening.
For me, mornings are the worst. Once I’m at work and moving, things improve although anxiety and fears in certain circumstances still make me go stiff. Bending is a problem. I have physio twice a week. Although it helps my knee, it does nothing for the SMS. My legs still feel like tree trunks as if I’d run a marathon.
I realise I only have SMS mildly, but it does make one anxious and fearful of the futur,e but then I’m luckier than most - I have a faith in God who I know will never leave me or forsake me, and who will soon put an end to the terrible suffering in the world. I know most people will not believe this but this hope keeps me going and gives me strength to carry on regardless.
I realise, unlike some SMS sufferers, that becasue I work in a hospital I was diagnosed quite quickly. The neurologists there - Dr. Brown and Dr. Barker - had seen SMS patients before and recognised my unusual walk, so I feel quite fortunate especially as I can pop in to see Dr Barker for a quick word any time on a Monday when he is there. The only problem is, they never seem to know the answers to the questions I ask. I suppose that’s what comes from being so privileged to have such a rare disease and being one in a million!
If this is a progressive disease, how quickly does it progress? Can we do anything
to slow it down? Why do I only experience back spasms in the mornings, never at any other time
even though my tablets are evenly spaced? Why do I feel anxious about having lunch in a crowded canteen and going stiff
when I go to leave? I suppose it’s the weaving in and out of the tables
that makes me feel uneasy, a bit like going down slopes fearing you might
go too fast and fall. Is it all in the head? Perhaps I’m going mad! Senile
dementia is setting in early. After all, I am getting on - I’m 55 you know.
Anyway, its all part of life’s rich tapestry; it could have been worse. Since writing this I have stopped going into the canteen as it’s too embarrassing. Sandwiches in the workshop suffice. What will happen next, I wonder? I might wake up and it may all be a dream!
Update October 10, 2009
Hello fellow Stiffy’s (sorry about that - that’s what they used to call me at work before I had to take early retirement, Mr. Stiffy. Well, you have to laugh otherwise it will just get you down and working in a hospital I saw a lot of people worse off than me).
The thing is, you have to keep positive and get on with life. I realise that I am not afflicted as badly as some of you so it’s easy for me to say, but perhaps I am just the sort of lucky person who can take things in my stride and make the best of it?
I fell in my pond twice. Well, I say pond, but it’s more of a rock pool with a pyramid of flagstones for a fountain. As I lay there on the rocks I thought “This is another fine mess I’ve got myself into” and laughed. I struggled to get out but when I finally managed to get up, I fell again, this time onto the fountain and demolished the flagstones. That hurt! Eventually I got out, slumped indoors and went to sleep. I had had enough.
As I live on my own, I had to call my son to help me put it all back together again. Boy, did he tell me off: “You should have asked me for help you stubborn old twit” blah blah blah.
I get told off all the time by my friends but I am independent and that's it. One day I expect I will do something silly, but that’s life. A few months ago, when the ’phone rang, I fell backwards onto a hard tiled floor. I lay there for sometime in pain then managed but eventually got to the ’phone to call an ambulance. When I arrived at A&E, I saw all the familair faces (the nurses) who all took the mick as usual, saying things like “you must mix more water with it - we have told you before”, “Oh, shut up fatso” and so on. Great fun, except for more cracked ribs! My x-rays looked like a road map.
Must go, lots to do, like sleep!.
Pete M.
PS: If anyone can help me, or I can help anyone else,1 would be pleased to hear from you. You can call me on: 01553-760540.